Celebrating Inchstones: Self doubt and reassurances!

Friday, October 28, 2011

Self doubt and reassurances!

It may be surprising to you to hear that I over think things. I play and replay decisions in my head. I guess many of us do that but I find myself doing about nearly everything with Asa....his meds, his docs, his tests, he food, his everything!

After our appointment with GI last week we decided he needed a gastric empty scan. Even with all Asa's GI issues he's never been investigated as to why. We can assume and try meds but he still has issues, major issues! So weset up the appointment at Vandy and it was this morning at 8am. Since we were just at Vandy on Tuesday I really didn't want to go back. We tried and debated and tried some more to get the scan done here in Jackson. Even after talking to the nuclear medicine tech here it just seemed like the best place for the test was Vandy.

And then I questioned and over thought whether we should go up last night and sleep in a hotel or drive up 3:hours and battle rush hour traffic this morning. Finally at 5:00pm I placed a super low bid on Price line to see if we could even get a room we could afford. Surprisingly we won and it was a great hotel! I love it when God gives me reaffirmation that I'm on the right path!

This is in the hotel this morning before the appointment. He was so good!

We got there early and it was pretty empty. About as empty as when Mom a and I left there at 6pm on Tuesday! Asa liked checking out the stairs and the automatic door. He made a little friend too. I wish I'd had the camera when he reached up and poked her in the ear! Lol

For this test they laced some of Asa's Elecare formula with a contrast. Then he laid on his back, strapped to a mat, with a scanner 6" above his body. Oh and he did this for 2 hours!!! I was so afraid that sensory sensitive boy would freak out some part of the process but he didn't! Not one little bit! As one friend said....Asa was unnatuarally good and insensitive!

He had to have a syringe to play with too! This entertained him for 1/2 the test!

A big thumbs up because he was handling it all like a rock star.....as long as he had an ear!

This is all the clearance he had. The straps were from his ankles up to his chest.

Clapping when he was finished! I don't know if you can tell but there was a huge sweat ring on the pillow from his head!

And as happy as I was for him doing so well, I was even happier when we got invited to a Rascal Flatt concert on our way out! Yep, we listened to them perform for 30 mins and then got to met them and chat and take pics!They were very sincere and kind with all the kids!

And if you don't know who Rascal Flatt is here is a song they were singing as we went in! Tons of emotions and lots of teary eyes!

Oh and we won't know anything about the test until next week.

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!